SUDC

Grief is a natural response to loss, flooding the brain with stress hormones and reshaping thoughts and feelings. It's okay to feel foggy or emotional; it's part of the brain's adaptation process.

In the aftermath of traumatic loss, finding stability amidst the turmoil of emotions is crucial for healing. Simple routines like waking up at the same time each day or having a nutritious breakfast; taking a short walk may seem mundane, but its impact is profound.

Research has shown that routine offers more than just a sense of normalcy—it provides structure, predictability, and control in a time when everything feels chaotic and uncertain. From a neurobiological perspective, adhering to routine helps regulate emotions and reduce stress. Engaging in familiar activities at specific times stabilizes neural pathways associated with emotional regulation, offering a sense of order amidst the chaos of grief.

Physically, routine plays a vital role in promoting overall well-being, especially for those who have experienced a traumatic loss. For example, engaging in regular exercise, even a short walk, can release endorphins, the body’s natural painkillers and mood elevators. This simple yet impactful activity can offer a brief respite from the overwhelming emotions associated with grief and provide a much-needed boost in mood. Establishing a consistent sleep schedule becomes crucial in managing the physical toll of grief. By prioritizing a regular bedtime and wake-up time, individuals can improve sleep quality, enhance mood, and bolster cognitive function.

But how do we incorporate routine into our lives amidst the chaos of loss? This is where SMART goals come into play. SMART goals provide a structured framework for setting and achieving objectives, making them particularly useful for building and maintaining routines and self-care plans.

Let’s say your goal is to incorporate mindfulness meditation into your daily routine to help manage stress and improve emotional well-being. Using the SMART framework, you could set a goal like this:

• Specific: I will practice mindfulness meditation for 10 minutes each morning before starting my day.
• Measurable: I will track my progress by recording the number of days per week I complete my meditation practice.
• Achievable: I will start with a 5-minute meditation and gradually increase to 10 minutes as I become more comfortable.
• Relevant: Mindfulness meditation aligns with my goal of reducing stress and improving emotional well-being.
• Time-Bound-: I will commit to practicing mindfulness meditation every morning for the next 30 days.

Incorporating SMART goals into your routine allows you to track your progress, stay motivated, and maintain momentum towards your objectives. Over time, you’ll find that these small, consistent actions add up to significant improvements in your overall well-being.

In addition to routine and SMART goals, another tool that can help individuals set routines in their lives after trauma and loss is the concept of habit stacking. Habit stacking involves linking new habits to existing ones, making it easier to incorporate them into your daily routine. For example, if you already have a habit of brushing your teeth before bed, you could stack a new habit like journaling or reading a book onto this existing routine. Other examples of habit stacking include doing a short meditation after your morning coffee, or practicing gratitude while you prepare dinner.

By combining routine, SMART goals, and habit stacking, individuals can create a supportive framework for healing and recovery in the aftermath of traumatic loss. Through small, consistent actions and intentional efforts, individuals can find solace amidst grief and gradually rebuild their lives with resilience and strength.

As you embark on this journey of rebuilding, remember to give yourself permission to start small and to slowly build routines over time. Healing is not a linear process, and it’s okay to take things one step at a time. Be gentle with yourself and give yourself grace as you relearn to live life in the aftermath of loss. Each small step forward is a victory, and with time and patience, you will find your way towards healing and wholeness once again.

Do you know a passionate young individual aged 12 and above?

We're on the lookout for Junior Ambassadors to join our volunteer team and help raise awareness for our cause.

If you or someone you know is interested in earning volunteer hours and making a difference, reach out to Ghazala@sudc.org today and be a part of something truly impactful!

Embrace the transformative power of self-care! 🌟 Imagine the boundless energy, creativity, and love you can share with the world when you prioritize your own well-being.

This Lift You Up Tuesday, let's ignite a ripple effect of positivity by reminding ourselves and others to cherish our own health and happiness.

Today, we honor all mothers, but we also recognize that Mother's Day isn't always filled with joy. For those who have experienced the unimaginable loss of a child, today may be bittersweet, filled with sorrow. We want to let you know that you are not alone.

💛 Our hearts are with you, and we honor the love and strength you continue to carry

Remember, not all who experience trauma develop Post Traumatic Stress Disorder (PTSD). While acute stress is immediate and may include flashbacks or anxiety, PTSD can persist for years.

Recovery is possible with support. Explore our trauma-informed services at no cost: https://sudc.org/grief-resources/

[...]

Hart kept posting videos, until one day, his class caught the eye of a woman all the way in Montana.

“One day I was just scrolling through Facebook and I came across a video that he had recorded with his first graders” Kristal Leonard said. “I just kept watching it over and over again.”

Leonard couldn’t help but think of her son Ryan when she watched each video. He passed away in 2020. Ryan was just 18-months-old.

“[He] would be going into kindergarten this year,” said Leonard. “We’re a very musical family, so I always pictured one day he would be singing and stuff.”

“Kristal let me know that unfortunately the night that he passed, she sang ‘Sweet Child O’ Mine’ to him.”

With that in mind, Mr. Hart’s class sang the Guns N’ Roses classic in a video dedicated to Kristal and Ryan.

“I just couldn’t believe that these kids that I had been watching for like a month were now singing my favorite song that I had sang to my son,” Leonard said. “I just sobbed for a good 15 minutes.”

What started as Hart sharing his passion for music with his kids, led to more than 3 million views and connections with people like Kristal all across the country.

“Certainly nothing I could ever anticipate, but if it’s a biproduct of me sitting here with these kids and recording it,” said Hart. “What can be greater than that?”

Ryan passed away from a sudden and unexplained death.

Kristal says her family leaned on the Sudden Unexplained Death in Childhood Foundation (SUDC) after Ryan passed. Their mission is to promote awareness and advocate for research for children affected by sudden unexplained deaths. You can learn more about them by clicking HERE.

You can view more of Matt Hart’s TikToks by clicking HERE.

Did you know?

Sudden Unexplained Death in Childhood occurs in Black/African American children at a rate more than 2.2 times that of white children. This staggering statistic sheds light on the urgent need to address disparities in healthcare and mental wellness among minority communities.

During this important week and month, let's come together to advocate for better access to maternal healthcare and mental health resources for Black and minority families. By raising awareness and fostering support, we can strive towards equitable care and better outcomes for all.

On #NationalSiblingsDay, we honor the cherished memories of those who left us too soon, especially siblings who are deeply missed. Today and every day, we send peace, love, and strength to all who carry the weight of grief for a lost brother or sister.

The SUDC Foundation recognizes the unique challenges of sibling loss, especially losing a sibling suddenly from unexplained causes. To those navigating this path, know that you are not alone. If you or someone you know is mourning the loss of a sibling, please visit the link in our bio for a list of supportive resources.

We stand with you, offering compassionate support and understanding, today and always.

https://sudc.org/for-siblings/

“At the blueness of the skies and in the warmth of the summer, we remember them.” Uplifting words to start off your week. Have you considered hosting a fundraising event in memory of a beloved SUDC child?

The SUDC Foundation would like to express our deepest gratitude to all the incredible volunteers who generously give their time, skills, and energy to support the SUDC Foundation and our mission.

Whether you are raising awareness, providing comfort to a grieving family, or hosting a fundraiser; your contributions, no matter how big or small, make a profound impact on the lives of those affected by Sudden Unexplained Death in Childhood (SUDC).

Thank you for being the heart and soul of our community. Your kindness, generosity, and compassionate support inspire us every day.

If you are interested in joining our incredible team of volunteers, please reach out to us at: info@sudc.org.

Together, let's continue to #ShineAlightOnSUDC and provide hope and comfort to those affected by SUDC.

Join Team SUDC for the 2024 TCS NYC Marathon! It's time to lace up our sneakers again, after an entire month of striding for #SUDCAwareness.

We're excited to announce that the SUDC Foundation has once again been selected as a charity partner for the TCS New York City Marathon!

We are grateful for the opportunity to continue raising awareness and accelerate our commitment to innovation & partnerships in SUDC Research. If you're interested in representing the SUDC Foundation in the 2024 NYC Marathon this November, please contact us at development@sudc.org.

There are some who bring a light so great into the world that even after they have gone, the light remains

The last bedtime of 17-month-old Hayden Fell’s life was heartbreakingly normal. Crib video shows the toddler in pajamas playing happily as his parents and sister sang “Wheels on the Bus” with his twin brother.

The next morning, Hayden’s dad couldn’t wake him. The tot had become one of several hundred seemingly healthy U.S. toddlers and preschoolers each year who suddenly die in their sleep and autopsies can’t tell why. But Hayden’s crib cam was recording all night — and offered a clue.

Seizures during sleep are a potential cause of at least some cases of sudden unexplained death in childhood, or SUDC, researchers at NYU Langone Health reported Thursday after analyzing home monitoring video that captured the deaths of seven sleeping toddlers.

Similar to SIDS in babies, SUDC is the term when these mysterious deaths occur any time after a child’s first birthday. Little is known about SUDC but some scientists have long suspected seizures may play a role. In addition to some genetics research, scientists also have found that a history of fever-related seizures was about 10 times more likely among the children who died suddenly than among youngsters the same age.

The new study is very small but offers the first direct evidence of a seizure link. Five of the toddlers died shortly after movements deemed to be a brief seizure by a team of forensic pathologists, a seizure specialist and a sleep specialist. A sixth child probably also had one, according to findings published online by the journal Neurology.

“It’s hard to watch,” said Dr. Orrin Devinsky, an NYU neurologist and the study’s senior author. “We have video which is in some ways the best evidence we may ever get of what’s happened to these kids.”

The recordings can’t prove fevers triggered the seizures but researchers noted several toddlers had signs of mild infections. One, Hayden, previously had such febrile seizures when he’d catch childhood bugs.

That raises a big question: Fever-related seizures are hugely common in young children, affecting 2% to 5% of tots between ages 6 months and 5 years. While scary, they’re hardly ever harmful. So how could anyone tell if occasionally, they might be a warning of something more serious?

“I thought he would be fine and it was just a matter of letting this run its course,” said Justin Fell, explaining how multiple doctors told the Bel Air, Maryland, family not to worry whenever Hayden had a fever-sparked seizure. Instead, “it was every parent’s nightmare.”

Laura Gould, one of the NYU researchers, understands that agonizing frustration. In 1997 she lost her 15-month-old daughter Maria to what later was named SUDC — the toddler woke up one night with a fever, was her usual happy self the next morning but died during a nap. Gould later co-founded the nonprofit SUDC Foundation and helped establish NYU’s registry of about 300 deaths — including the first seven videos offered by families — for research.

Gould doesn’t want families to be scared by the new findings — they won’t change advice about febrile seizures. Instead, researchers next will have to determine if it’s possible to tease out differences between those very rare children who die and the masses who are fine after an occasional seizure.

“If we can figure out the children at risk, maybe we can change their outcome,” she said.

It’s hard for autopsies to find evidence of a seizure so using video from home monitors to reevaluate deaths “is actually very clever,” said Dr. Marco Hefti, a neuropathologist at the University of Iowa who wasn’t involved with the study but has also investigated SUDC.

“It’s not that parents need to be stressing out, panicking about every febrile seizure,” he cautioned. But Hefti said it’s time for additional research, including animal studies and possibly sleep studies in children, to better understand what’s going on.

SUDC is estimated to claim over 400 lives a year in the U.S. Most occur during sleep. And just over half, about 250 deaths a year, are in 1- to 4-year-olds.

Sudden death in babies occurs more often and gets more public attention — along with more research funding that in turn has uncovered risk factors and prevention advice such as to put infants to sleep on their backs. But SUDC happens to youngsters long past the age of SIDS. The Fells had never even heard of it until Hayden died.

Hayden experienced his first seizure shortly before his first birthday, when a cold-like virus sparked a fever. Additional mild bugs triggered several more but Hayden always rapidly bounced back — until the night in November 2022 when he died.

Other recent studies, at NYU and by a team at Boston Children’s Hospital, have hunted genetic links to SUDC — finding that some children harbored mutations in genes associated with heart or brain disorders, including irregular heartbeats and epilepsy.

Heart problems, including those mutations, couldn’t explain the deaths of the toddlers in the video study, Devinsky said. He cautioned that far more research is needed but said epilepsy patients sometimes experience difficulty breathing after a seizure that can lead to death — and raised the prospect that maybe some SIDS deaths could have seizure links, too.

Hayden’s mom, Katie Czajkowski-Fell, hopes the video evidence helps finally lead to answers.

“His life, it was too precious and too important for us to not try and do something with this tragedy.”

March is Sudden Unexplained Death in Childhood (SUDC) Awareness Month. The SUDC Foundation to #ShineALightOnSUDC

[Roseland, New Jersey] - March marks Sudden Unexplained Death in Childhood (SUDC) Awareness Month, and the SUDC Foundation is shining a light on this devastating occurrence with its #ShineALightOnSUDC campaign and proclamation initiative. These public efforts aim to bring attention to this devastating tragedy and honor the children who have passed away as well as serve as a beacon of hope and comfort for families impacted by SUDC Throughout March, landmarks across the United States, United Kingdom, Australia, and Canada will illuminate in blue and yellow, the official colors of the SUDC Foundation, drawing attention to this little-known but tragic medical mystery.

Every year, the SUDC Foundation spearheads a nationwide campaign urging U.S. states and local municipalities to declare March is SUDC Awareness Month.

SUDC, the unexpected death of a child aged 1-18 years that remains unexplained after thorough investigation, affects approximately 450 children in the United States annually, according to the Center for Disease Control.

"The SUDC Foundation is committed to increasing awareness, funding research, and serving those affected by SUDC. March is an important month for the SUDC Foundation as it provides an opportunity to shine a light on SUDC and help families who have been impacted by SUDC find us. One child gone too soon, is one too many, regardless of the numbers," stated Tina Yun Lee, Executive Director of the SUDC Foundation.

Throughout March, the SUDC Foundation hopes to bring together communities across the country to increase awareness and acknowledge the Foundation's critical work in helping families cope with the devastating loss of their child.

"In 2023, 82 landmarks were illuminated throughout the world and 43 U.S. states officially recognized March as SUDC Awareness Month. I am thrilled to see the #ShineALightOnSUDC campaign gaining momentum and local municipalities also participating in proclamations, recognizing that one child lost is a community of broken hearts," said Lee.

Unlike Sudden Infant Death Syndrome (SIDS), SIDS research has received approximately $500 million in public funding, but unfortunately, there has been no targeted funding for SUDC during the same time period (NIH Estimates of Funding for Various Research, Condition, and Disease Categories, 2023).

The campaign also hopes to raise funds for research to predict and prevent SUDC and ensuring that trauma-informed resources and supports continue to be provided at no cost to those they serve.

"SUDC is the fifth leading category of death in children ages 1 to 4 and along with a lack of targeted funding for SUDC research highlights a critical gap in our understanding and ability to prevent and predict. It's time that we acknowledge the tragic impact of child loss not only on families across the country but also our communities and encourage more people to join us in our mission and help us live in a world free of SUDC," said Lee. The SUDC Foundation, a 501(c)(3), non-profit organization, is the only organization worldwide dedicated to raising awareness, funding research, and serving those impacted by SUDC. The SUDC Foundation currently serves over 1,900+ families in more than 23 countries, offering all services at no charge to its beneficiaries.

To learn more about how you can #ShineALightOnSUDC and how you can support the SUDC Foundation's mission, please visit www.sudc.org.